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New to this forum but not new to Lupus

Hi,

As the title of this posting indicates, I have had Lupus (SLE) for quite some time. I was diagnosed with SLE at the age of 16 - I am now 27. During these last 11 years, I've had several complications (pleurisy, pneumonia, joint paint, seizures, fatigue, hospitalizations, etc.) but I also have had the blessing of many years of remission.

I graduated college, went to law school, traveled and lived in many places around the world, met a great man, found a not so great job that pays the bills. I felt, having faced many, many, many ups and downs with this f$!*ing disease, I had actually come to terms with Lupus. In fact, I looked at Lupus as a blessing rather than a curse - something that forced me to examine my life in a very mindful way, eat healthy and nurturing foods, get plenty of healing exercise, stay out of the sun, etc. - things that everyone really SHOULD do, but because of Lupus I HAD to do. And by doing all of these things I felt pretty good most of the time, for long stretches even great and "normal".

But in the last year and a half two new challenges have been thrown my way. I have been diagnosed with Discoid Lupus and have very large lesions on my scalp and I have lost a considerable amount of hair. I know it's incredibly vain, but this has been incredibly debilitating to my sense of self, and my sense of sexuality and beauty. I am a natural redhead (strawberry blond) and have always been told that my hair is one of my best features. All of that is now gone. I never wear my hair down, I always cover the top of my head, etc. Is anyone out there experiencing this type of Discoid Lupus? If so, how are you dealing with it? Are there any hopes of gaining hair back? I can't discuss this with anyone in my life, I feel such a sense of shame and embarrassment.

I had also been experiencing symptoms of lupus nephritis such as foamy urine, excessive weight gain (30lbs. in 2 months I think due to water retention - is that possible?), swelling, etc. so I had a 24 hour urine test done. The only part of the results my rheumatologist would discuss with me were the protein levels (I'm losing a little over 4,000 mg of protein per day), however in an early urinalysis she said there were also red blood cells in my urine. I'm scheduled to see a nephrologist but I'm really worried about what stage I might be in relating to Lupus Nephritis. I am also incredibly afraid of the treatment options out there for this condition. Does anyone have any advice? Does anyone know what this level of protein loss could mean?

I'm sorry about the length of this posting, I'm just really needing some help and guidance from people who understand what I'm talking about and feeling - the only person I've ever known who had Lupus died from disease complications several years ago. I can't believe this forum exists! I'm in a really dark place right now and desperately want to get out of it. I feel the more I know and understand, the less I will feel out of control.

If you've made it to the end, thank you. I would greatly appreciate an email or response. Thanks!

Hi Idrinker :lol:
Almost all of us have suffered the hair loss. In fact, if you read some of the posts from our members, you will find many stories about our hair loss, our alternatives, how we coped with it and (most important) our elation when our hair grew back (and it almost always does!).
My hair loss was on the top of my head. It got very thin in some spots and completely bald in others. I was reassured by my doctor that this loss was not permanent, so I could wear wigs, do weaves, etc. until the hair began to grow back. Your hair will most assuredly grow back. However, everyone here understands how badly the hair loss can make you feel. It is hard suffering through it and you may think that your options are limited, but take heart in knowing that it will grow back.
Are you taking any antimalarials for your discoid lupus? If so, you must be patient with this drug. It can take several weeks before you begin to see its effects. But, it is a very effective drug for the skin disorders that occur with Lupus. You may (I hope that you don't) experience lesions (aka: ulcers) in your mouth, your nose, your vaginal area and sometimes around the anus. These, too, respond very well to treatment with antimalarials (such as Plaquenil).

With reference to your protein leak in your urine. It might help to understand what is happening. Systemic lupus erythematosus (SLE) is a disorder in which the immune system produces antibodies against the bodyís own healthy cells and tissues (called autoantibodies). These autoantibodies contribute to damage (inflammation) in various parts of the body such as the brain, the joints, the skin and the kidney. This damage alters the normal function of these different organs and tissues. When the inflammation affects the kidneys, it is called lupus nephritis or lupus glomerulonephritis. Glomerulonephritis refers to diseases that damage the filters or glomeruli of the kidney. Glomeruli are tiny structures composed of blood vessels that are responsible for filtering the blood of harmful or unnecessary substances. There a million glomerular filters within each kidney. In glomerulonephritis, inflammation of some or all of the glomerular filters reduces their ability to clear these substances out of the bloodstream. The damage also allows protein to leak into the urine and this is referred to as proteinuria or albuminuria. Red blood cells can also leak through the filters into the urine and is referred to as hematuria.
Although abnormal blood and urine tests in an individual with SLE usually points to a diagnosis of lupus nephritis, a kidney biopsy is often performed to ascertain the amount of damage.
There are several different patterns (or classes) of kidney damage that can be seen in lupus nephritis. This depends on which part of the glomerular filter is affected by the accumulation of autoantibodies and the degree of the damage. The names of the different patterns are:
Mesangial lupus nephritis (class II)
Proliferative lupus nephritis (class III and IV)
Membranous lupus nephritis (class V)

The only way to know (with certainty) which pattern is present is by looking at a small piece of kidney tissue under a microscope. It is important to know this information because it can determine the type of treatment needed and can help to determine your overall prognosis. the findings on a kidney biopsy of a lupus patient are classified according to the appearance of the tissue and immune abnormalities seen under the microscope.
However, in addition to the numerous unique forms of lupus kidney disease, other types of kidney diseases that are not from lupus can sometimes occur in a patient with lupus. While treatment for lupus nephritis can sometimes be initiated without a kidney biopsy, more often, a biopsy is done before starting treatment. So, when the blood tests and the overall state of the lupus disease seem to indicate it, the biopsy can be done and will define the cause of the kidney disease when it is in question.
Your doctor should have spent some time talking to you about the type of pattern that you have and what that means. Sometimes, an individual with one pattern of kidney damage can develop a different pattern of injury years later.
The high numbers could indicate that more glomerula and/or more red cells are involved. Your doctor will estimate your glomerular filtration rate based on your creatinine score. Treatment usually involves medications that reduce inflammation and suppress the immune system. When lupus nephritis leads to kidney failure, however, kidney dialysis or transplantation may become necessary.
Corticosteroids, such as prednisone and prednisolone, are generally the initial treatment for lupus nephritis. The steroids may be given by mouth or intravenously. Also, high dose corticosteroids (methylprednisolone) that are given in single, large doses (pulses) intravenously for three consecutive days are also a useful initial treatment for lupus nephritis, which is then followed by corticosteroids by mouth.
The immune suppression medications that are used to treat lupus nephritis include azathioprine (Imuran) and cyclophosphamide (Cytoxan), both of which can be given by mouth. Cyclophosphamide is also given as an intravenous, single large dose (pulse) in certain situations. These pulses are continued monthly for six months and every three months thereafter. Recently, the immunosuppressant drug mycophenolate mofetil (Cellcept) has been used successfully to treat lupus kidney disease and seems to represent another option.

Thank you for your response (and I will remember to only post one message from now on :lol: ).

In terms of your information regarding the kidney stuff, that is VERY helpful. I've always kind of felt like, "Well at least I don't have any kidney involvement so it can't be that bad" and now I do, so it's been hard.

I've been taking prednisone, plaquenil, azathioprene, and naprelene for the past 10 years so I am familiar with those medications. I am not familiar with the various "chemo" drugs - is it really chemotherapy?

In terms of the hair loss, I do have discoid lesions on my scalp and was told by doctor that the hair would not, unfortunately, grow back. I'm wondering if anyone has heard of skin transplants for hair regrowth in areas with too much scarring, and if it works.

I'm so thankful that you are all out there! This forum is a godsend to me. I've been feeling very alone dealing with all of these new aspects to a disease I thought I had mostly under control - how wrong I was.

How do you all deal with living your lives when experiencing flares or toxic treatments, etc.? Right now I seem to only have energy to go to work and MAYBE make myself dinner.

I'm scared.

I am so scared about the hair loss thing. I do not want to lose my hair. I thought that lupus will be active when you are around my age (16 to 21), and that it will slow down when you are an adult. Am I wrong?

I really feel so sorry for you. I hope you get well soon. Sometimes, reading the stories in this forum make me feel very sad and that I should do something to help them.

I am 16 this year and I am suffering from lupus nephritis class III. I admit that it has not been easy for me, nor for my family, and pray to God that all this ordeal will end.

Idrinker;
I, personally, have never heard of hair loss with Lupus that was permanent! I've heard many say that it took some time before the hair re-grew, but it did re-grow. I've also heard that, for some, the hair grew back completely different than it was before the loss (this happened to me..my hair was very thick and curly before the loss. It grew back very fine and a not quite as curly). But, I've never heard of permanent hair loss due to discoid lesions on the scalp. So, I am at a loss about your doctor's prognosis for your hair. I've heard of permanent hair loss when a person is taking higher doses of Cytoxan for a long period of time. But, even this does not happen frequently with that particular drug.
With reference to the "chemo drugs":
In cancer treatment, chemotherapy refers to particular drugs used to kill or slow the reproduction of rapidly multiplying cells. In rheumatology (auto-immune rheumatic diseases like Lupus), chemotherapy is designed to decrease the abnormal behavior of cells, not to kill the cells. Therefore, the doses of the medications used for rheumatic or autoimmune diseases are generally much lower than the doses used for cancer treatment.
In many rheumatic diseases like Lupus, inflammation causes damage to parts of the body, as I explained earlier. In many cases, inflammation results from autoimmunity, a malfunction of the immune system where your own tissues or organs are not recognized as such and are attacked by the body's immune system. Chemotherapy helps Lupus patients with the inflammatory process of the disease because it slows cell reproduction and decreases certain products made by these cells that cause an inflammatory response to occur.
Although there are many chemotherapy drugs, only some of them are used to treat rheumatic diseases. They include:

Rheumatrex. Rheumatrex (methotrexate) is the chemotherapeutic drug most widely used by rheumatologists because it is effective in treating rheumatoid arthritis and certain other rheumatic diseases (such as certain forms of vasculitis, or inflammation of blood vessels), and it is relatively safe. Most patients can take Rheumatrex by mouth in a single, weekly dose. Some patients prefer to take it as an injection once a week. Itís common side effects are relatively easy to monitor, treat, and prevent.

Imuran. Imuran has been used for many years as an immunosuppressive drug to prevent organ rejection in patients receiving kidney transplants. Usually taken in a single daily dose by mouth, Imuran also is used to suppress the abnormal immune response in some patients with vasculitis, systemic lupus erythematosus (lupus), and rheumatoid arthritis.

Cytoxan. Cytoxan is a more powerful drug and has more side effects than Rheumatrex and Imuran. It is used to treat the most aggressive and dangerous rheumatic diseases and their complications, such as severe systemic lupus erythematosus and some forms of vasculitis. This drug, taken either by mouth or injection, directly attacks the parts of the cell nucleus that contain the genes interfering with the production of certain proteins. These proteins (antibodies) are involved with the autoimmune response. Although rapidly reproducing cells are more susceptible to this action than resting cells, any cell in the body can be affected if there is enough drugs present.

Suffering from side effects of chemotherapeutic drugs is fairly common, even though the doses are typically lower than the doses used to treat cancer. All of these drugs can suppress the formation of blood cells which can result in the following side effects:
Anemia or low red blood cell count. Red blood cells are the cells that carry oxygen throughout your body

Also, be aware that Rheumatrex and Imuran can damage your liver, and Cytoxan can damage the urinary bladder lining and cause bleeding. Also, as I mentioned above, Cytoxan can cause hair loss and sterility. Rheumatrex and Cytoxan can cause damage to the lungs.

There is no such thing as a drug that is entirely safe. It is for this reason that your doctor should discuss all of the possible benefits of these drugs, as well as their side effects. The occurrence of side effects depends on the dose, the type of medication, and length of time that you are taking the medication. It is very important to have the appropriate follow-up examinations and laboratory testing while taking any of these chemotherapeutic drugs. Careful monitoring by your doctor and close attention to your body by you can minimize all of these risks.
I hope I've answered your questions :lol:
Peace and Blessings
Saysusie

You are amazing! Thank you for sharing your wisdom and hope. I pray that you are correct regarding the permanence of my hair loss. I've lost hair before and it has grown back, so hopefully that's the same situation here.

Also, thank you for explaining the difference between these "chemo" therapies. They all do sound pretty toxic, although I guess the benefits can be pretty great.